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Post by heckofagal on Jan 31, 2019 17:53:04 GMT
I guess this is a S/O of "how do you cope?"...thread.
I've been battling dizziness issues off and on for probably 10 years. Initially they discovered I was hypothyroid and my #1 hypo symptom was dizziness. Got on thyroid meds and still had issues. Finally found a holistic doctor that really cared how I felt and she tweaked my med and added supplements to help get me back to mostly normal. But the dizziness issues kept returning even though it appeared my thyroid numbers looked good (and I don't mean the regular standards, I mean looking where I was in the range allowed and where I should have been optimal.) My awesome doc kept saying she thought it was some kind of migraine, which I just didn't believe. Finally researched enough to think maybe it was some kind of autonomic nervous issue so I made an appointment with a neurologist and he diagnosed me with Vestibular Migraines. I wasn't 100% convinced, I mean I seldom had a headache, I was dizzy! And the weirdest things could bring in on, noises in a busy restuarant, pattern of a carpet, sounds echoing off a high ceiling, flourescent lights, some fragrances. So I went home and did some research and everything I read was like an a-ha moment. Yep, I have Vestibular Migraines. My doctor sent me home with a script for Topomax, and had warned me about the side effects. I was so eager to be better I was ready to deal with side effects. But I was so severely dizzy when I tried to take it I could barely get out of my bed. Did not want to get any worse so I stopped taking it. Years later, after doing some research, I wonder what would have happend if he started me off on a micro dose and gently increased my dose, as I seem to be very senstive to med changes. We will never know as I will never take that awful med again. We ended up changing a blood pressure med I was on to Propranolol and that seemed to help some so we stayed there. So my neuro also sent me home with an elimination diet to try and determine what foods might be triggering these symptoms. Did the diet for 3 months and never noticed a difference. You are supposed to slowly add things back into the diet to see if you have a reaction, but if you just seem dizzy all the time its hard to do that.
That was around 3 years ago. Since then I've gone through good spurts and bad spurts. Lately its been bad and I'm tired of living like this. I've always been hesitant to try any other meds because I got so super dizzy on the Topomax, but I think I want to try another med. Preferably one also used to treat anxiety/depression as I could also use some help in that area.
I'm a bit wigged out with the research I've been doing. Reading about people having withdrawal symptoms trying to wean off these meds sound horrible. But living like this is horrible too and I need to take a chance.
Any peas out there with Vestibular Migraines? What has helped you?
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Post by iamkristinl16 on Jan 31, 2019 18:00:57 GMT
I was diagnosed with vestibular migraines several years ago. At that time, the dizziness and feelings of being off balance were pretty frequent and I had some scary situations while driving. They didn't give me any suggestions on how to help make it better. I believe that was before I got pregnant with my youngest and that it has been better since I had him, but I don't remember the timeline well. I have had some issues here and there in the last few years. One night I had really bad vertigo and went to the ER thinking I might be having a stroke or something. I have had a few other instances of mild dizziness and an occular migraine, but they are not very often or easy to track what could have triggered them. When I had the vertigo they prescribed dramamine and I believe Ativan. I hope you get some relief soon. It would be miserable to have ongoing issues with dizziness.  |
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imsirius
Prolific Pea
Call it as I see it.
Posts: 7,661
Location: Floating in the black veil.
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Post by imsirius on Jan 31, 2019 18:05:55 GMT
I don't have migraine, but I do have Benign Paroxysmal Positional Vertigo. (BBVP)
I do exercises that help with the vertigo when it hits that do help. However, since starting my anxiety meds, I have not had an episode in over a year. Don't know if it's correlated or not but I'm happy.
Have you tried chiropractic or acupuncture treatments? My bff had vestibular issues and the chiro helped a lot.
Vertigo and dizziness sucks. I hope you can find help.
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Post by Patter on Jan 31, 2019 18:08:34 GMT
Our neurologist started our daughter on a new medication called Aimovig. She tried many meds and did Botox for several years. She has different migraines but supposedly this medication is for most all migraines. She started off with one injection a month, and that did not work. Now she does two injections a month. She is on her 2nd month, and she has only had one migraine. She is also very dizzy all of the time because of her POTS but I will have to make a note and ask her if that has gotten better. I believe it has. Another med student in her class is on the same medication, and she is also having extremely wonderful results with it! Hoping you find what helps you best!
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Post by heckofagal on Jan 31, 2019 18:16:10 GMT
I was diagnosed with vestibular migraines several years ago. At that time, the dizziness and feelings of being off balance were pretty frequent and I had some scary situations while driving. They didn't give me any suggestions on how to help make it better. I believe that was before I got pregnant with my youngest and that it has been better since I had him, but I don't remember the timeline well. I have had some issues here and there in the last few years. One night I had really bad vertigo and went to the ER thinking I might be having a stroke or something. I have had a few other instances of mild dizziness and an occular migraine, but they are not very often or easy to track what could have triggered them. When I had the vertigo they prescribed dramamine and I believe Ativan. I hope you get some relief soon. It would be miserable to have ongoing issues with dizziness. I had a couple trips to the ER early on as well. This disorder also brings on ANXIETY! I'm so glad giving birth to your youngest seems to have solved your issues. I contemplated requesting a hysterectomy as mine are definitely ramped up right before my period, but I've heard of some people not having issues with Vestibular migraines until after they've had a hysterectomy.  |
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Post by heckofagal on Jan 31, 2019 18:22:27 GMT
I don't have migraine, but I do have Benign Paroxysmal Positional Vertigo. (BBVP) I do exercises that help with the vertigo when it hits that do help. However, since starting my anxiety meds, I have not had an episode in over a year. Don't know if it's correlated or not but I'm happy. Have you tried chiropractic or acupuncture treatments? My bff had vestibular issues and the chiro helped a lot. Vertigo and dizziness sucks. I hope you can find help. Do you mind if I ask what anxiety med you are on and the dose? I actually tried to go to a chiropractor for a strain in my neck before I was diagnosed with VM and when he tried to adjust my neck the room was spinning and I almost passed out. Good thing I was laying down! Been to scared to go back to another one again. I was considering trying one of the Balance clinics or looking for a place that does Vestibular Therapy. But from what I understand they all want you to do the 3 1/2 hour testing before they treat you. And the testing involves everything that sounds like torture for someone who does not have dizziness issues. I don't know if I could do that for 3 1/2 hours! I do know that is how the therapy goes too, they make you dizzy so you re-learn the balance. UGH! |
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Post by heckofagal on Jan 31, 2019 18:25:34 GMT
Our neurologist started our daughter on a new medication called Aimovig. She tried many meds and did Botox for several years. She has different migraines but supposedly this medication is for most all migraines. She started off with one injection a month, and that did not work. Now she does two injections a month. She is on her 2nd month, and she has only had one migraine. She is also very dizzy all of the time because of her POTS but I will have to make a note and ask her if that has gotten better. I believe it has. Another med student in her class is on the same medication, and she is also having extremely wonderful results with it! Hoping you find what helps you best! I've heard of some folks with VM finding relief with Aimovig. My sister-in-law just started taking it for traditional migraines and she is impressed so far, but from what I understand it can be very costly if insurance does not cover it. Please ask your DD if she feels her dizziness has improved. Thanks! |
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imsirius
Prolific Pea
Call it as I see it.
Posts: 7,661
Location: Floating in the black veil.
Jul 12, 2014 19:59:28 GMT
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Post by imsirius on Jan 31, 2019 18:29:56 GMT
I don't have migraine, but I do have Benign Paroxysmal Positional Vertigo. (BBVP) I do exercises that help with the vertigo when it hits that do help. However, since starting my anxiety meds, I have not had an episode in over a year. Don't know if it's correlated or not but I'm happy. Have you tried chiropractic or acupuncture treatments? My bff had vestibular issues and the chiro helped a lot. Vertigo and dizziness sucks. I hope you can find help. Do you mind if I ask what anxiety med you are on and the dose? I actually tried to go to a chiropractor for a strain in my neck before I was diagnosed with VM and when he tried to adjust my neck the room was spinning and I almost passed out. Good thing I was laying down! Been to scared to go back to another one again. I was considering trying one of the Balance clinics or looking for a place that does Vestibular Therapy. But from what I understand they all want you to do the 3 1/2 hour testing before they treat you. And the testing involves everything that sounds like torture for someone who does not have dizziness issues. I don't know if I could do that for 3 1/2 hours! I do know that is how the therapy goes too, they make you dizzy so you re-learn the balance. UGH! I'm on Cipralex and a low dose..only 10 mg. Therapeutic dose is 20 mg but it was too strong for me. 10 is perfect with no side effects, except tiredness. |
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Post by myboysnme on Jan 31, 2019 20:06:30 GMT
This is so helpful. I do not but my coworker does and all of your comments are new information for her. Hope it is OK to share your suggestions.
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Post by Patter on Jan 31, 2019 20:12:37 GMT
Our neurologist started our daughter on a new medication called Aimovig. She tried many meds and did Botox for several years. She has different migraines but supposedly this medication is for most all migraines. She started off with one injection a month, and that did not work. Now she does two injections a month. She is on her 2nd month, and she has only had one migraine. She is also very dizzy all of the time because of her POTS but I will have to make a note and ask her if that has gotten better. I believe it has. Another med student in her class is on the same medication, and she is also having extremely wonderful results with it! Hoping you find what helps you best! I've heard of some folks with VM finding relief with Aimovig. My sister-in-law just started taking it for traditional migraines and she is impressed so far, but from what I understand it can be very costly if insurance does not cover it. Please ask your DD if she feels her dizziness has improved. Thanks! Sure, I will ask her. And hers is free. Her neurologist was able to get it free for her (nothing to do with her insurance). |
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Post by marie on Jan 31, 2019 22:46:24 GMT
I was diagnosed with migraine associated vertigo four years ago after waking up with severe vertigo one day. I have seen three ENTs and five neurologists trying to get this figured out. It has been quite debilitating and life-changing. Wake up most days with vertigo with or without a headache.
The first neurologist I saw did a ton of vestibular testing. It's just like you expect. All kinds of tests that actually induce the vertigo and you end up getting pretty nauseous and throw up He also ruled out bppv. I attended vestibular therapy for about 6 weeks. They gave me a lot of home exercises involving my eyes. it was also suggested I see an optometrist for a full workup. I ended up getting stronger reading glasses as a result. I also saw an allergist to make sure my allergies were under control.
I have tried all kinds of meds including gabapentin ,topamax and Klonopin, with no success. I will be doing a trial of nortriptyline next. still trying to find a drug that can be a preventative.
The neurologist I'm seeing now is in Chicago at Chicago dizziness and hearing. He specializes in all types of vertigo. My vertigo problems actually started after my periods stopped.
A Few things have been helpful. I keep a daily log of the weather, my symptoms when I wake up and if anything I do during the day increases my symptoms. I have found I'm very much affected by the barometric pressure, also,scrolling on my phone, reading, being the passenger in a car. if I wake up with bad vertigo or headache I take a Sudafed, and Excedrin migraine, and drink several glasses of water. if the vertigo gets to be too much, I take 2mg of Valium. If I know I need to be in the car I take Dramamine or prescription meclizine. Another thing that's helped is I do a massage twice a month especially for my head, neck and shoulders.
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Post by Patter on Jan 31, 2019 23:11:33 GMT
heckofagal, her dizziness has not gotten better since on Aimovig but her migraines have. It certainly wouldn't hurt to try. It is a preventative, and seems to have some good science behind why it works. My daughter explained it to me but I have forgotten.  Just know that if one injection does not work, you may need a double dose like my daughter.
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paigepea
Drama Llama
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Posts: 5,609
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Post by paigepea on Jan 31, 2019 23:23:58 GMT
I have all types of migraines and movement of my head in a funny way can cause them and they can or cannot make me dizzy, blur my vision and make it so I have to sit down. I don’t take regular medication - I didn’t want to - instead I take a cocktail when I feel one coming on, which can be everyday for a two week period or not at all for a month at a time. The neuro found no consistency. I did the diary to try and find triggers. The diary became a big trigger and I gave up.
I did notice chocolate and sometimes sugar would usually trigger a migraine. I gave up chocolate 7 years ago. My neurologist said he didn’t believe foods were triggers but believed it was what else was going on in my day that made the food trigger a migraine - did I use the chocolate to replace a meal or satisfy a craving because I didn’t sleep well, etc.
I take Axert in its generic form and naparoxin. It used to work in 30 min when I could get the name brand meds. The generic takes 1-1.5 hr to kick in.
Good luck,
P.
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Sept 16, 2024 10:24:05 GMT
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Post by Deleted on Jan 31, 2019 23:27:06 GMT
I get vertigo several times a month and think it's tied to my hormones. Thankfully, it's rarely that bad and sometimes, it's so mild that I don't even realize that it's the cause of my headache until I also start feeling a bit nauseous. Meclizine usually helps with that. I used to have frequent migraines with auras, but since I've been taking magnesium and have gotten my acid refulx in check, they've all but stopped.
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Post by stacmac on Feb 1, 2019 2:11:59 GMT
Yes, I get migraines with an aura and dizziness from vestibular migraines. I don't think I will be much help unfortunately, as mine have eased a lot!
Have you looked into physiotherapy? Not chiropractic or anything like that. But you can get physio to help with someone that specializes in it.
I can offer some hope because I am so much better than I used to be! I remember nursing my son and just sitting there thinking "this is my new normal, I just have to get used to it" and being depressed but it's been so much better these past 2 years. I know my triggers: If I get too tired, it comes back. Elevators, flying, long car or train rides muck me around.
I found mine dissipated when I started getting more sleep and looking after myself better. I also get an 'out of body'feeling from my anxiety and I have to realise when it's just that making me dizzy.
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Post by Crack-a-lackin on Feb 1, 2019 2:37:40 GMT
You might try adjusting your diet again. I suffer from dizziness and vertigo, and migraines of several varieties, and I have felt much better after eating gluten free. I don’t have anxiety (or it’s lessened quite a bit) and I sleep better as a result of removing gluten, which has then lessened my migraines.
I hope you find a solution soon. It’s miserable trying to live with those symptoms. And I agree with your assessment of Topomax...that’s a bad drug.
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Post by pjaye on Feb 1, 2019 4:07:09 GMT
I mean I seldom had a headache, I was dizzy! We ended up changing a blood pressure med I was on to Propranolol
I was officially diagnosed with vestibular migraines over 10 years ago. Until then I'd never heard of them. Before that I'd get sudden onset of severe dizziness, sometimes with vomiting, but rarely had an actual headache with them, but I'd have to go to bed and basically sleep it off for two days....the dizziness was so bad that I couldn't function normally and there was a "fuzziness" in my head, but not really a headache. Doctors always said it was either an acute episode of labyrinthitis of BBPV, but I never felt my symptoms matched properly to those.
Then it was getting bad and starting to affect work and I saw another doctor who suggested this right away...and when I looked up the history and the symptoms, they were a perfect match to what I experienced. I started on metoprolol and a diuretic (Hydrochlorothiazide). I still take the metoprolol every day, and at first I took half a diuretic tablet twice a week, but now I only take it when I feel a "fullness" in my ears. I was also given Sumatriptan, but I never used it because I don't get any warning. I am perfectly fine one minute and then the dizziness comes out of nowhere and I have to go to bed. Eventually the tablets I had expired and I never got more because the others were working.
I rarely have the really bad episodes anymore where I can't do anything but sleep for two days...haven't had one of those in years. But I do still get some minor episodes, and I manage those with prochlorperazine tablets (I use the 5mg ones that dissolve in the mouth) and OTC analgesia like ibuprofen or aspirin. If I can take those pills as soon as I turn my head and I get that "wham" of dizziness, I can avoid it turning into a bigger episode. Sometimes the dizziness persists and I'll take the prochlorperazine several times a day and it's usually gone in 24-48hrs. I always carry some prochlorperazine with me so if it starts up and can have a dose straight away.
It's not a very well known condition because often when I tell medical staff that I take the beta-blocker & diuretic for migraine, they have never heard of it. I'm planning to stay on those tablets because I don't want to get back to what was happening before I started them.
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Post by iamkristinl16 on Feb 1, 2019 13:31:41 GMT
I was diagnosed with vestibular migraines several years ago. At that time, the dizziness and feelings of being off balance were pretty frequent and I had some scary situations while driving. They didn't give me any suggestions on how to help make it better. I believe that was before I got pregnant with my youngest and that it has been better since I had him, but I don't remember the timeline well. I have had some issues here and there in the last few years. One night I had really bad vertigo and went to the ER thinking I might be having a stroke or something. I have had a few other instances of mild dizziness and an occular migraine, but they are not very often or easy to track what could have triggered them. When I had the vertigo they prescribed dramamine and I believe Ativan. I hope you get some relief soon. It would be miserable to have ongoing issues with dizziness. I had a couple trips to the ER early on as well. This disorder also brings on ANXIETY! I'm so glad giving birth to your youngest seems to have solved your issues. I contemplated requesting a hysterectomy as mine are definitely ramped up right before my period, but I've heard of some people not having issues with Vestibular migraines until after they've had a hysterectomy. Oh, that stinks! I have some weird things that seem to be hormone related (cold sore breakouts, headaches, etc). I hope I don’t have more problems with balance in the years to come. |
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Post by heckofagal on Feb 5, 2019 17:34:30 GMT
Thanks for all your input peas! It's greatly appreciated!
I'm struggling quite a bit this week and I was concerned that I am getting worse not better...and then I googled issues you can have when you stop drinking Diet Coke. I absolutely have an addiction. And I know this could be contributing to the migraine issue. I did stop drinking it for 35 days a year or so ago, and that did not help the dizziness, but I'm ready to be done with this bad relationship with Diet Coke. I will miss it dearly, but if there is even a fraction of a chance that it can help my dizziness issues I gotta kick it to the curb!
Anyway, I started reading about Aspertame Withdrawal. I'm still drinking a sweet tea each day to keep my caffeine consumption up as I know that would bring on headaches. But he knew there was such a thing as Aspertame Withdrawal. And it can cause the same kind of symptoms I get with Vestibular Migraines. Dizziness...Anxiety...Visions issues...Stomach distress. Knowing all that makes me feel better, my migraines are not getting worse. And that just proves that I need to be off this stupid addictive drink even more. Baby steps, but I will get there!
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Deleted
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Sept 16, 2024 10:24:05 GMT
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Post by Deleted on Feb 5, 2019 20:33:51 GMT
I was diagnosed with migraine associated vertigo four years ago after waking up with severe vertigo one day. I have seen three ENTs and five neurologists trying to get this figured out. It has been quite debilitating and life-changing. Wake up most days with vertigo with or without a headache. The first neurologist I saw did a ton of vestibular testing. It's just like you expect. All kinds of tests that actually induce the vertigo and you end up getting pretty nauseous and throw up He also ruled out bppv. I attended vestibular therapy for about 6 weeks. They gave me a lot of home exercises involving my eyes. it was also suggested I see an optometrist for a full workup. I ended up getting stronger reading glasses as a result. I also saw an allergist to make sure my allergies were under control. I have tried all kinds of meds including gabapentin ,topamax and Klonopin, with no success. I will be doing a trial of nortriptyline next. still trying to find a drug that can be a preventative. The neurologist I'm seeing now is in Chicago at Chicago dizziness and hearing. He specializes in all types of vertigo. My vertigo problems actually started after my periods stopped. A Few things have been helpful. I keep a daily log of the weather, my symptoms when I wake up and if anything I do during the day increases my symptoms. I have found I'm very much affected by the barometric pressure, also,scrolling on my phone, reading, being the passenger in a car. if I wake up with bad vertigo or headache I take a Sudafed, and Excedrin migraine, and drink several glasses of water. if the vertigo gets to be too much, I take 2mg of Valium. If I know I need to be in the car I take Dramamine or prescription meclizine. Another thing that's helped is I do a massage twice a month especially for my head, neck and shoulders. I've had migraines for over 40 years. I was on Nortriptyline as a preventative Rx for migraines, but it didn't help at all for me. Hope it works for you!!
A NOTE FROM THIS MEDICARE RECIPIENT: They didn't approve my Botox shots for migraines. They saw my history and my history of meds, but wouldn't approve this because it was injections! I'm sure they wouldn't approve any other injections either.
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Just know that if one injection does not work, you may need a double dose like my daughter.
